7th Patient Centricity & Collaboration World Congress 2025 Europe

Amplifying Patients Voice in Research, Drug Development and Healthcare

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Co-located with the DECENTRALIZED & HYBRID CLINICAL TRIALS World Congress 2025 Europe

Patient meets Innovation & Collaboration

Patient empowerment and understanding to inspire and create a meaningful impact.

Introduction
Insight
Who Should Attend

Facilitate Live is very pleased to welcome you to our upcoming Patient Centricity and Collaboration World Congress 2025 Europe.
The two-day Congress aims to build meaningful collaborations within the industry, advocacy groups, clinicians, researchers, and most importantly, patients and their caregivers. Gain practical strategies and best practices on challenges, innovations, technologies, and concepts in achieving this goal.

The congress focuses on a “Amplifying Patients Voice in Research, Drug Development and Healthcare”.

Patient-centricity is a vital aspect in the research and development of biopharmaceutical products, disease management, designing a treatment, clinical trial, or other health solutions. In order to create a patient-centric solution, one must truly embrace a collaborative endeavor with the patient and their caregivers. Establishing a patient-centric solution involves getting feedback from real patients and their loved ones, and making decisions based on their medical conditions, experiences, needs, perspectives, and priorities.

In the current climate where the patients are increasingly becoming more empowered, Lifesciences and Pharmaceutical companies should confront the status quo and welcome the opportunities to embrace a wide range of patient-centered perspectives presented by an emerging ecosystem. While the technology-driven world poses challenges, it also holds opportunities to build a positive patient experience by coordinating the health ecosystem to center on the patient. Reevaluating how it develops and delivers drugs to improve experiences and outcomes and also to continuously adapt and transform to meet the evolving needs of patients.

The industry has come a long way with utilizing a patient-centered approach. The concept has gone from a buzzword to a potential trend, to a perceivable goal. Whilst the industry has advanced in recent years, the evolving healthcare model and ecosystem brought forward by advances in technology and more involved, empowered patients, means true patient centricity is a continuing quest and a compelling commitment.

We look forward to meeting you at the Congress!

Sincerely yours,

Jocelyn Raguindin
Conference Director
Paradigm Global Events / Facilitate Live

GAIN LATEST INSIGHTS ON:

What does patient centricity mean for the pharmaceutical and life science industry?
Why does the industry need to be a part of the patient-centric movement?
Patient-centric initiatives that have a tremendous impact
Successful strategies and best practices to successfully manage patient-centricity in healthcare
How to develop and execute a strategy to improve patient engagement?
Benefits of patient engagement in drug development and discovery process
Evolving challenges and key considerations inthe ethical and compliant use of relevant data
The potential value of providing access to relevant data to all stakeholders
How to maintain mutually beneficial ongoing partnerships between the patients and industry?
Overcoming myriad challenges to make the clinical trial and drug development process more patient-centred or patient-focused
Setting the pace and expectations thru collaborations
Role of researchers in bridging the communication gap between life science industry and the patient it serves
How to achieve a deeper understanding of the patient experience in the real world.
Practical ways in putting the patient at thecentre of a powerful brand

WHO SHOULD ATTEND?

This Congress is beneficial to patients, pharmaceutical, biotech companies, researchers, physicians, patient advocacy groups, regulatory agencies, technology, and healthcare companies.

Network with Presidents, Heads/Chiefs, VPs, Directors, and Managers in the area of:

Head of Patient Engagement
Patient Services
Engagement Strategy
R&D Patient Engagement
Medical Affairs
Regulatory Affairs and Policy
Patient Support and Patient Engagement
RWE, and Data Management
Quality and Compliance
Clinical Development
Programme Management
Supply Chain Management
Patient Access
Clinical Research
Global Head, Digital Accelerator
Patient Engagement & Portfolio Strategy
Patient Support Strategy & Insights
Patient Experience

Medical Affairs, Global Patient Advocacy & Alliances
Government Policy and Advocacy
Digital Patient Experience Lead
Clinical Operations
Clinical Insights and Experience
Head of Strategy, Access Services
Vice President, Site Collaborations and Patient Centricity
Head of Neuroscience
And much more...

Key Industry Expert Speakers 2025

Comfirmed speakers Apply to speak

Schedule

Content Rich Program Agenda! Featuring Keynote Presentations, Stream Sessions, Panel, and Round Table Discussions.

Day 1 25/02/2025
Day 2 26/02/2025

Auditorium 1

08:00 am - WELCOME COFFEE & REGISTRATION

08:30 am - CHAIRPERSON’S OPENING REMARKS

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

TRENDS & STRATEGIES IN INTEGRATING PATIENT VOICE

8:40 am - OPENING KEYNOTE PANEL: Realizing the importance of patient needs and engagement inimproving patient outcomes?

The value of engaging and communicating with the patient in every part of the clinical research process
Examining the right approach for patient and industry to positively impact healthcare costs and patient outcomes through patient engagement
How can patient expertise create significant value to the industry?
What are the best practices and strategies to guarantee that patient centricity is at the forefront of pharma?

Moderator:

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

Panelists:

Rebecca Lisle, Head of Patient Advocacy, EU and International, Jazz Pharmaceuticals

Heidi Müller, Head of Patient Advocacy, Galapagos

Steve Clark, Founder and Patient Advocate, Strive for Five

9:20 am - PLENARY KEYNOTE: ISPEP: Creating a community of Change Champions

The era of evidence-based engagement leads to a new type of patient science
Patient Engagement is a highly developed skill set and an established discipline
ISPEP comprises patient engagement professionals of the highest integrity
At ISPEP, members are ‘all in’ and committed to change leadership

Emma Sutcliffe, Founder, International Society of Patient Engagement Professionals (ISPEP)

9:45 am - PLENARY KEYNOTE: To be confirmed shortly

Dr. Anthony Yanni, Senior Vice President and Global Head of Patient Centricity, Astellas Pharma

10:10 - PLENARY KEYNOTE: Systematic PE in Industry from vision to reality

Systematic PE and Advocacy is in evolution
Stakeholders in the HC system are accelerating efforts to involve patients
Similarly Industry is looking for acceleration of PE
Case study of NVS on the evolution
Focused approach on PE and Advocacy in a new model
Key areas of PE in Deve to drive impact
Early successes (examples from a few disease areas)

Michaela Dinboeck, Head Patient Engagement Global Product Strategy, Novartis Pharma

10:35 am - MORNING NETWORKING BREAK

11:15 am - SPONSORED SPOTLIGHT: Closing the Gaps in Patient-Centricity: Revolutionizing Medical Education for HCPs***

Where are we today with integrating the patient voice into healthcare and HCP-patient/caregiver communication?
Why is change needed?
Why the time is now to integrate patient-centricity into medical education for HCPs
How medical education for HCPs can evolve, including patient integration, to provide a holistic approach that supports advancing patient outcomes

Victoria Harvey-Jones, PhD,Associate Director of Clinical Strategy, Medscape Oncology Global

11:45 pm - SPONSORED SPOTLIGHT: New Advanced Technologies to Drive Speed in Clinical Trial Design

Learn about the latest technologies that can improve the efficiency and effectiveness of clinical trial design, addressing issues like increasing complexity
Discover the principles and best practices for clinical trial design that can increase the likelihood of success, through a combination of literature analysis and practical experience
Examine the challenges faced by patients during clinical trials and learn about potential solutions that can reduce the burden and increase the benefits for patients

12:15 pm - SPONSORED SPOTLIGHT: Targeting Patient Centricity for Maximum Impact

Understand where patient centricity can advance the interests shared by industry and the patient community
Consider how focused goals and programs can strengthen research and development, commercialization and access
Focus on opportunities to integrate patients, caregivers, consumers and advocates’ key concerns and insights into company plans and decision making
Discuss applications of this targeted approach to your patient centricity goals and programs

RESERVED

12:45 pm - SPONSORED SPOTLIGHT: Overcoming barriers and improving circumstantial awareness in clinical trials using real-world patient experience

The importance of data democratization
Common challenges in clinical data review that hinders clinical trials
Strategies in overcoming these challenges
How to seamlessly integrate data from a variety of sources?
How to improve safety review efficiencies and reduce the timeline to critical studies?

RESERVED

1:15 pm - NETWORKING LUNCH

Afternoon Stream Sessions

ACCESS & COLLABORATIONS

2:15 pm - SESSION CHAIR OPENING REMARKS

2:20 pm - The role and impact of industry as convener of the advocacy community

Industry often has many deep relationships across TAs and expertise within the advocacy community and with various experts on topics within patient centricity
Bringing these groups together along with subject matter experts on topics critical and relevant to the community is very valuable in helping to initiate partnerships and sharing of best practices that can benefit the community and elevate patient centricity
The utilization of workshops and having defined outputs as a part of the convening helps the community take the learnings into their everyday advocacy work

Janelle A. Goins, Sr. Director, Global Community
Engagement & Advocacy, Gilead Sciences, Inc

2:55 pm - SPONSORED SESSION: Enabling access to clinical trials and new therapeutic options by partnerships and community empowerment

Case studies showcasing successful partnerships between healthcare providers, pharmaceutical companies, and patient advocacy groups.
Strategies for empowering communities through education, training and support networks to increase active participation in decision making
Innovative approaches that facilitate patient engagement and enhance collaboration among stakeholders.

Dr. Andreas L.G. Reimann, Co-Founder and Managing Partner, admedicum

3:20 pm - Practical ways in putting the patient at the centre of a powerful brand

Have patient “Advisors” on a panel for clinical trials.
Have a patient advocate/liaison collaborating.
Patient Surveys

Dakar De La Cruz, Director, Global Patient Insights & Solutions, Alexion Pharmaceuticals

3:45 pm - AFTERNOON NETWORKING BREAK

4:25 pm - Integrating Patient Engagement with Patient Experience Data (PED): Driving Transformative Healthcare Decision Making

Emphasize the need for patient voices in drug development and healthcare delivery.
Explore the Role of Patient Experience Data (PED)
and discuss how effective Patient Engagement (PE) informs PED and aligns healthcare decisions with patient needs.
Introduce key tools for Patient-Centric Initiatives
Share strategies and provide practical approaches for integrating patient engagement into the generation and use of PED
Foster Collaborative Partnerships
Offer takeaways that attendees can implement to enhance patient engagement in their organizations.

Hayley Chapman, Senior Program Director, PFMD

4:50 pm - Bridging the Gap Between Government, Pharmaceutical and Patients on clinical trials and research from a Patient's perspective

Education of the process of clinical trials
Listen to the Patient needs and help them to understand what the focus of the trial is.
Understanding Pharmaceutical costs of trials

RESERVED

5:15 pm - Patient v. Consumer: DTC Is The New Patient Engagement

Carole Scrafton, Director & Co-Founder, Flutters and
Strutters

5:40 pm - The art of decision making- lessons learnt and reflection.

Different interpretations of decision making across stakeholders
Value on patient outcomes and engagement (case studies)
Introduce the working model of decision making.

6:05 pm - CHAIRPERSON’S CLOSING REMARKS

RESEARCH & DEVELOPMENT

2:15 pm - SESSION CHAIR OPENING REMARKS

2:20 pm - Migraine In The Workplace : Perception Is Not Reality

What we know
What we should know
What we should do ?

Pascal Derrien, Chief Executive Officer, Migraine
Ireland

2:55 pm - Navigating our way through the no man’s land of an ultra rare and newly discovered disease.

Receiving a life changing diagnosis
How DHDDS mutations affect individuals
Creating a research community
Overcoming barriers
Our plans and hopes from the future

Melanie Dixon, Trustee, Cure DHDDS

3:20 pm - How can psychology maximise patient engagement and retention in clinical trials?

Psychology frameworks to uncover attributes and variations in patient behaviour
Key barriers and enablers patient behaviour within trial engagement using psychological analysis
Recommendation for enhancing engagement in trials using behaviour change methods

Dr Sumira Riaz, Chartered Health Psychologist and
Patient Engagement Consultant, Unboxed
Psychology

3:45 pm - AFTERNOON NETWORKING BREAK

4:25 pm - Patient-Generated Data: The new currency of collaboration.

Across the spectrum of disease, from common to rare, patient data is becoming a critical driver of drug discovery, development, diagnosis,
commercialization and inclusive and equitable access to trials and treatments.

Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation

4:50 pm- The problem of the clinical trial system

Why clinical trials are struggling with patient recruitment, diversity in the trial participant population and retention of the clinical trial participants and how all of these problems are linked to the overall system which clinical trials are formed around.
Possible solutions on how to fix these problems and move forward to improve clinical trials and drug development all together.

Rasmus Hjorth, Head of Communication, James Lind
Care

5:15 pm - Case Study: “Creating and Designing Meaningful Patient-Centered Translational Research

Patients and caregivers know best when it means improving the quality of life.
Reality is much different than theory.
Benefits of real-world experience inserted in basic science equals endpoints and outcomes that can be overlooked as unimportant.

RESERVED

5:40 pm - Clinical Trials involving Patient Organisations to deliver some services

To Follow

Bob Stevens, Group CEO, MPS.SOCIETY

6:05 pm - CHAIRPERSON’S CLOSING REMARKS

6:15 - 7:15 pm - NETWORKING DRINK RECEPTION

Auditorium 1

8:00 am - WELCOME COFFEE & REGISTRATION

8:30 am - CHAIRPERSON’S OPENING REMARKS

Co-Chair:

Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo

Co-Chair:

Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation

CHALLENGES & POTENTIALS OF PATIENT ENGAGEMENT

8:40 am - KEYNOTE PANEL: Increasing inclusion, diversity and equity in clinical research: Breaking down barriers to access

Why diversity and inclusion in clinical trials are crucial?
Understanding critical barriers to minority and underserved patient communities participation in clinical trials
Equity and Inclusion of Rare Disease Patients – A Must on Many Levels
What can the industry do to promote more diversity in the future?
Latest guidelines that make healthcare more inclusive

Moderator:

Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo

Panelists:

Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease

Naomi Litchfield, Director, Patient Advocacy, Bionical Emas

Alfred Samuels, Patient Advocate, Inspirational Author, Mentor, and Public Speaker

Amy Yarker, Senior Business Development Manager, NIHR Research

Nikul Bakshi, Research Involvement Lead, Parkinson’s UK

9:20 am - PLENARY KEYNOTE: Charity begins at home: taking an internal view on patient centricity

Why drive internal culture of patient centricity
Creating a fertile internal environment
Identifying internal champions
What next? How NN rare D has operationalized patient centricity internally

Ify Osunkwo, Chief Patient Officer, Novo Nordisk Rare Disease

9:45 am - PLENARY KEYNOTE: Meaningful Patient Engagement to drive true Patient Centricity

What does patient centricity mean for the pharmaceutical and life science industry?
Why does the industry need to be a part of the patient-centric movement?
Patient-centric initiatives that have a tremendous impact – case study
Successful strategies and best practices to successfully manage patient-centricity in with description of frameworks to operationalize patient centric work
How to maintain mutually beneficial ongoing partnerships between the patients and industry?

Wendy Erler, VP, Global Head Patient Experience, Advocacy and Insights, AstraZeneca

10:10 am - PLENARY SESSION: Small frictions, big impact: Facilitating progress of patient involvement with a behavioural science perspective

The implementation of patient engagement is by no means uniform, varying massively between different contexts and organisations. This talk will:

Reveal some intriguing mechanisms driving human behaviour
Challenge the efficacy of a ‘fuel-based’ mindset
Uncover the impact of frictions in impeding progress
Show how the COM-B model can be utilised to diagnose difficulties and design targeted interventions to overcome them

Dr Liz Clark, Visiting Lecturer & Patient Engagement Theme Lead, King’s College London

10:35 am - MORNING NETWORKING BREAK

11:15 am - PLENARY SESSION: Strategies to Increase Patient Engagement in Healthcare

Discuss current challenges blocking effective Patient Engagement
Putting the patient first achieves the best experience and outcome for that person and their family
Digital patient engagement tools and personalized care models to enhance healthcare experiences and outcomes.

Lara Bloom, President and CEO, The Ehlers-Danlos Society

11:40 am - JOINT PLATFORM: How patient support programs can make a difference: improving the lives of people living with XLH

X-linked hypophosphatemia (XLH) is one of appr. 8,000 rare diseases, it affects those living with XLH and their families in multiple ways
Access to adequate care for people living with rare diseases is very often more limited than for other patient communities
The support program “XLHCare” aims to support children, adolescents and adults with XLH in terms of therapy application and adherence
More than five years of practical experience with XLH Care have proven the multi-faceted benefits of the program

Dr. Holger Storcks, Public Affairs and Patient Advocacy Director DACH, Kyowa Kirin GmbH

Christiane Sonntag, Patient Services Manager, Kyowa Kirin GmbH

12:05 pm - SPOTLIGHT PRESENTATION: Governance & culture: making patient-centric decisions the easy option

The Octopus approach: delivering coordinated, informed patient-centric decisions across the business.
Understanding which parts of the organisation collaborate with Patient Advocacy Groups & how information flows between them.
Benchmarking organisational patient-centricity: using patient advocacy maturity models to show where, and how, to achieve best practice.
Everyone is part of patient success: the role of leadership & internal comms in galvanising patient-centric thinking

Mark Hanson, Co-Founder, Delta Consulting

Bianca Swalem, Co-Founder, Delta Consulting

12:35 pm - PRESENTATION: The expertise of a Non-Expert - why you should listen closely to the patient who knows nothing.

Experienced patient advocates are invaluable on steering groups and strategic advisory boards, often bringing a wealth of personal and community experience and knowledge. But can they really remember what it is like to be sat in a clinic, with a new diagnosis, and be handed a study information sheet immediately after having been told about standard of care treatment for the first time?
When companies rely on input from patients who are highly knowledgeable and experienced in research, their protocols and participant-facing materials are likely missing out on receiving feedback from the very people they most want to reach once sites open to recruitment.
Hearing from research unaware and/or hesitant patients is as valuable as working alongside patient advocates and experts, to ensure that viewpoints and feedback from the widest possible patient population is incorporated into study design, monitoring and delivery.
In this session you we will share how to find and build trusting relationships with people who do not necessarily put themselves forwards for research engagement activities, and where and how they can add the most value in study development.

Emily Pickering, Patient Engagement in Clinical Development Service Lead, NIHR Research

1:05 pm - NETWORKING LUNCH

2:00 pm - CASE STUDY: Turning a vision into reality – the ABPI PPI strategy – our first 3 years

The session will share with delegates how the ABPI developed a PPI strategy
The learning and insight gathered from the first 3 years
The results and impact
The next phase of PPI

Amit Aggarwal, Executive Director Medical Affairs & Strategic Partnerships, ABPI

2:25 pm - JOINT PLATFORM: Principles into Practice. Patient Engagement in Real World Research

Challenges in implementing principles of good practice
Pragmatic approaches to inclusivity and representation

Josie Godfrey, Co-Founder and CEO, Realise Advocacy

Lindsay Birrell, Co-CEO, Realise Advocacy

2:50 pm - PLENARY SESSION: Insights from a PAG board - a recent survey

What are the challenges and opportunities PAG boards encounter with Pharma?
Has the engagement landscape worsened or improved in recent years?
What solutions are they working towards?
What do they cite as best practice?

Nigel Nicholls, General Manager UK/Nordics & Baltics, Egetis Therapeutics AB

3:00 pm - JOINT PLATFORM: Driving Impact: The Essential Role of Patient Engagement in ESG/Sustainability Commitments — Insights from Roche

Highlight the Impact of Patient Engagement: Emphasize how integrating patient engagement (PE) can significantly enhance and accelerate ESG and sustainability commitments within the life sciences sector.
Analyze Key Trends in the PE-Sustainability Landscape: Present insights from PFMD’s recent analysis of life science companies, showcasing emerging trends in the integration of PE into ESG and sustainability strategies.
Showcase Roche’s Leadership in integrating Patient Engagement in Sustainability Strategies: Illustrate Roche as a leading example by detailing its innovative incorporation of patient engagement under stakeholder engagement in the social section of its materiality report, demonstrating a commitment to prioritizing patient perspectives.

Samantha Knott, Global Patient Partnership Leader, Roche
Hayley Chapman, Senior Program Director, PFMD

3:15 pm - AFTERNOON NETWORKING BREAK

3:45 pm - JOINT PLATFORM: Driving Impact: The Essential Role of Patient Engagement in ESG/Sustainability Commitments — Insights from Roche

Highlight the Impact of Patient Engagement
Analyze Key Trends in the PE-Sustainability Landscape
Showcase Roche’s Leadership in integrating Patient Engagement in Sustainability Strategies

Samantha Knott, Global Patient Partnership Leader, Roche

Hayley Chapman, Senior Program Director, PFMD

4:10 pm - PANEL DISCUSSION: The evolution of patient-centred drug development

Recognising key areas to ensure patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.
Patient’s input to improve quality, relevance, safety and efficacy of drug development
Challenges and opportunities for patient-centric product design
The role of respective stakeholders and the way they interact, from the early steps of drug development to access in real life?

Moderator:

Dawn Lobban, Co-founder & Managing Partner, Amica Scientific.

Panelist:

Barbara Valastro, Ph.D. Head of R&D Patient Science, AstraZeneca

Dr Andreas L.G. Reimann, Managing Partner, Co-founder, admedicum GmbH & Co KG

Claire Bale, Associate Director of Research, Parkinson’s UK

4:50 pm - CLOSING PANEL DISCUSSION: Driving patient-centric healthcare: the new frontier

Understanding the drivers for innovation in pharma
Partnering with patients and placing patient well-being at the core of all initiatives
Real-world data and patient-reported outcomes presents the power and the potential to redesign healthcare
Innovative approaches for direct-to-patient assume significant importance for driving patient-centricity
Technologies that enhance the patient-centricity in pharma

Moderator:

Panellist:

5:20 pm - CHAIRPERSON’S CLOSING REMARKS

Co-Chair:

Gunnar Schroefel, Senior Director Global Patient Advocacy, Daiichi Sankyo

Co-Chair:

Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation

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Testimonials

what people say

Thank you for a good experience with the PARADIGM Global Events… very high level, very good Organization, we overpassed our expectatives, we will be pending for another congress related to pharmaceutical and biotech… we learned a lot, and i think that the content of agenda was state of the art, thank you again.

Salvador Berrios

ERP/ CRM / Product Configurator Manager

The consistently high quality of international faculty was most impressive. It was also obvious that they were carefully chosen not only for their particular expertise but also for their ability to communicate the subject matter to clinical and non-clinical participants alike. As market access consultant for pharma clients of various sizes, I now feel much better prepared to explain the nuances & dynamics involved in bringing their products to market. In addition, I am in a much better position to intelligently advice my clients & help them set realistic expectations

Thomas Martin

Associate Vice President, VCGA - Quintiles

I was impressed with the organization of this event. I attend many conferences per year and find the organizers on site to be detached and not focus on good service to the delegates. This team was even providing weather forecast warning to ensure everyone was aware and made appropriate plans. Well Done.